Support Team
One of the biggest gifts you can give yourself or a loved one when navigating the end-of-life journey is a support team.
Communicating with your healthcare team
For as long as they are physically and mentally able, your loved one is responsible for making decisions about how they are looked after, and it is important that they feel empowered to always decide what is best for them, with advice from their support team.
As their carer, you may find yourself working on their behalf with other members of your healthcare team, to make sure their personal, cultural, spiritual values are clearly understood and respected. It can help to make sure that important information is always recorded so you can review it, or relay accurately to other family members.
It can also be helpful to have other people present at meetings and appointments with members of your healthcare team, so you can focus on making sure your loved one is feeling supported, rather than trying to remember everything that is said.
Enduring Power of Attorney
It may be useful to find out more about setting up an Enduring Power of Attorney for the person you are caring for. A Personal Care and Welfare Attorney is someone who can make healthcare and personal care decisions if your loved one is no longer able to make these decisions themselves.
Who is your healthcare team?
It’s vital for your loved one’s comfort that you have good channels of communication with their doctor and other team members.
The team may include your family doctor or General Practitioner (GP), palliative care physician, hospice care coordinators, hospice nurses, district nurses, counsellors, occupational therapist, pharmacist, dietician, complementary therapist, physiotherapist, social workers and a spiritual carer as well as volunteers, personal care workers or home support workers.
While this team works with and for you, your primary family doctor (GP) is usually the best place to start with any medical queries you may have.
How should I talk to my loved one?
Friends and family may be uncomfortable talking about death; it can often feel like a taboo subject that people don’t like to openly bring up. If you are comfortable about it, encourage people to talk openly about your situation, including how you and your loved one are feeling, what you are planning and the changes they are facing.
People who are facing end-of-life have so much to offer, so the important thing is to manage their needs as well as possible, so they can continue to live, and enjoy, life. Even in palliative care, most people enjoy being surrounded by typical daily life, with visits from family, hearing about your day, listening to jokes and stories, reading the news, having people share their thoughts and plans and fears. This helps your loved one to still feel like part of the living world, and can help energise them and encourage them to keep actively living.
It may help to ask your loved one questions like:
- If I could change one thing to make things better for you today, what would that be?
- Who is someone you haven’t seen for a while that you’d like to catch up with?
- What is concerning you today and how can we change that?
- What are the books / films / poems you enjoy and could we share one together?
- How can I help you the most right now?
- It can be useful to ask family members to think whether anything about their relationship with the dying person needs to be addressed, and to help them find the words to do it or ways to show it.
Accepting help from your support circle
Family/whānau, friends, neighbours and community, members of any social organisations or faith communities you belong to, ministers, priests or other spiritual advisers, can all help to build a non-medical support network. It can be helpful to reach out to people before you need them, letting them know your situation and asking for their support in the future, when it is needed.
Friends and family can feel helpless when they learn someone is dying, so by asking for their support, you are also allowing them to find a purpose and feel good about contributing to your loved ones’ needs.
By helping out, whether it is picking up food or prescriptions, mowing lawns or cooking, or picking children up from school, they can feel that they are sharing the load in a positive, purposeful way.
Some people make a list of what they need done and put it on a board so visitors can sign up for a task; thus everyone knows who’s doing what and when. Sometimes making a roster for people to visit, sit with your loved one, cook meals or help with children is a great way for everyone to contribute, and also create a clear plan so your loved one always knows what is happening and so you can schedule some all important downtime.
Frequently Asked Questions
Visitors are often welcome, but at times it can be exhausting for your loved one. There may be too many, too often, or they may stay too long. Talk about the possibility of limiting visits to 10 minutes. Some people find using a roster system for visitors is helpful. If you use email, send a weekly or daily email to a group of friends updating them on the situation, and include any tasks they can help with.
Many people consider the use of alternative/complementary therapies when mainstream medicine can no longer offer a cure. If you are considering using alternative/complementary therapies, it is important to talk to your doctor about the therapies you wish to use.
Some therapies may interact with prescription medicines and it is important that you get the best out of all therapies. Some hospices have complementary therapists working within their programme of care – ask your hospice if they have this service available to you. Find mobile hair, beauty and wellness services near you.
Yes, being around young people can bring joy to someone who is dying. Children can help your loved one feel connected to life and the future. However, it’s important to prepare children appropriately for what they might see and experience. Have honest, age-appropriate conversations with them about death and dying beforehand. Set clear expectations about visit length and behaviour, and always give children the choice about whether they want to visit, never force them. After visits, check in with children about their feelings and answer their questions honestly.
Explore resources on how to talk to children about death.
Most people want to help, but they may not have been in this situation before and will be happier with clear instructions and boundaries from you on what your loved one needs and can accept. Here are some ideas to consider:
– Do you need meals cooked?
– Do you need help with housework?
– Mowing lawns or picking up children from school?
– Do you want people to let you know before they drop by?
Asking thoughtful questions can help you understand your loved one’s needs and wishes better. It may help to ask your loved one questions like:
– If I could change one thing to make things better for you today, what would that be?
– Who is someone you haven’t seen for a while that you’d like to catch up with?
– What is concerning you today and how can we change that?
– What are the books / films / poems you enjoy and could we share one together?
– How can I help you the most right now?
Caring for someone at the end of life is demanding, and it’s essential to care for yourself too. Hospice New Zealand has developed the Hospice for Carers you can download for information and resources available in your area.
Download Hospice Guide for Carers
Respite care is short-term care that gives a carer a break, while making sure the person they care for is still supported and safe. It can be planned in advance or arranged in an emergency, and it might last for a few hours, a few days, or longer, depending on what’s needed.
Palliative & End of Life Care Providers in New Zealand
Celebrate With Sally
Damara Pearl
Palliative & End of Life Care
End of Life Doula Alliance Aotearoa
Palliative & End of Life Care
An End of Life Doula accompanies a person, and their family, as they navigate life leading up to their death and beyond. It is a non-medical role, providing holistic practical, emotional, spiritual, cultural and social care, tailored to the needs of the person, as and when they arise. Empowering the person to live their best life right up to the end. Find end-of-life doulas in New Zealand here.